Henry Bear Village Press Release
June 28, 2024

For Henry AHC Inc.

Burlington, VT

A cold call from Henry’s mom, Mary (President of For Henry AHC) to Ashley Farland (owner of DandyLion, a local home furnishing company) to make a “Henry Pillow” has turned into a movement of Vermont businesses rallying to support Henry.

Henry is a local 4-year-old Vermonter born with a very rare, one in a million, severe, genetic neurological condition called AHC - alternating hemiplegia of childhood. AHC causes Henry to have seizures, breathing difficulty, and temporary paralysis near daily. When Henry was diagnosed, his parents were told there was no treatment or cure for AHC and that they could expect these life threatening symptoms to occur daily while Henry’s condition worsened as AHC is neuro-degenerative. Henry’s parents were unwilling to accept this reality - of having to watch helplessly as their sweet baby suffered - and decided to do something about it by starting their non-profit, For Henry AHC Inc. (AKA For Henry Inc. EIN: 92-1330008).

For Henry AHC’s mission is to fund and develop a treatment for Henry, which opens the door for others with his condition and many other related conditions to be treated. This treatment - called an ASO - is being designed for Henry at Boston Children’s Hospital with Dr. Tim Yu’s team and he will hopefully be treated in 1 year. ASOs are expensive to develop and cost $3M each. Over the past two years, For Henry AHC has raised $1.5M through fundraising in events, social media, and traditional media, including a  CNN article which raised $600,000 in 24 hours. Henry still needs the remaining $1.5M before he can be treated.

In an effort to raise funds and awareness for Henry, a group of Vermont businesses has rallied around him in creating Henry’s Village. Mary and Ashley teamed up with Vermont Teddy Bear who generously created a four foot Henry Bear who has been dressed and accessorized by iconic Vermont brands including: Orvis, The Vermont Flannel Co., Johnson Woolen Mill, Skida, Darn Tough, Commando, DandyLion, Simon Pearce, Danforth, Field Company, Vermont Butcher Block, Stephanie Grace Ceramics, Queen City Dry Goods, and 4T2D. This Henry Bear serves as the mascot for Henry’s Village and has inspired other local businesses to support Henry through roundups at City Market Coop and Jersey Mike’s, reusable bag & flower donations at Hannaford, and Henry themed smoothie at Ecobean.

For Henry AHC is hosting a dinner on August 10th at Snowfarm Vineyard in South Hero from 6-9pm to celebrate Henry’s Village. This dinner will be provided by favorite Vermont food and beverage sponsors, including Snowfarm Vineyard, Zero Gravity, Whistle Pig Whiskey, Jasper Hill Farm, Ben and Jerry’s, Cold Hollow Cider Mill, Prohibition Pig, American Flatbread, Pizzeria Verita, Our House Bistro, August First, Nu Chocolat, Folino's, Ecobean, and Roll Away Cafe. The event will include an auction, concert from Kat Wright and her band, flowers from June Farm, and professional photography by Colette Kulig.

All current and prospective members of Henry’s Village are encouraged to support Henry through raising awareness on social media and newsletters, offering employee charitable matches, donating auction or gift bag items, making a corporate charitable donation, and sharing our story with the media. The impact of Henry’s village reaches far beyond Henry, in supporting his historic treatment which will change many lives.